Hypotonia In Adults – Interview About Life & Lessons Learned

by Aculbertson

Hypotonia in adults

The following is an interview with Meagan Varecha, an artist and student living in Spokane, Washington. You can view her work here.


1. Can you tell us a little bit about yourself?

I am a twenty-one-year-old aspiring artist based in Spokane, Washington. I have congenital hypotonia-cerebral palsy along with chronic pain and other diagnoses. I am also currently a full-time student at Eastern Washington University graduating in June of 2020 with a Bachelor of Art’s degree in studio art (emphasis in digital) as well as minors in communication studies, disabilities studies and art history. My goal with this degree is to hopefully to combine my art with my disability studies and create awareness between both communities. I have plans to go back and get my master’s degree later down the road. My artwork focuses mainly on my ongoing journey with chronic pain as well as my diagnosis with hypotonia-CP. My work has been featured in a variety of shows across Washington State.


2. In your own words, how would you describe hypotonia?

For the longest time, I never understand how to answer this question. It was always explained to me that hypotonia was just a form of low muscle tone and that it’s like fighting gravity all day. Which is exactly what it feels like, but sometimes this isn’t always a sufficient answer. It wasn’t actually until I read the blog Surestep posted about explaining it through the use of a rubber band that I really understood the definition of it and could explain so others would understand. I would describe hypotonia now as not only low muscle tone but that my muscles are in a relaxed state thus affecting my day to day life.


3. How did it impact your childhood? What challenges did you face?

Continuous therapy and doctor appointments were always present throughout my childhood, but I never saw it as something negatively impacting me. Instead, it allowed me to learn how to set goals while still adapting and strengthening my body. And a lot of my childhood was focused around how I could adapt to the body I have. Some challenges included being more tired than my fellow peers in school, recognizing that I have limitations, and knowing when to be vocal about the breaks I needed. Having hypotonia also impacted my childhood for the better. Through my diagnosis, I was able to have experiences like participating in hippotherapy (using horseback riding as a therapeutic treatment) which is an amazing memory I keep from my childhood.


4. What do you wish someone had told you or done for you while you were growing up?

I wish someone could have prepared me more for hypotonia as an adult. But, the problem with that is there isn’t much out there about having hypotonia while being an adult; which is why I am so excited to do this interview. I hope through this I can help those understand what hypotonia looks like as an adult. And while there will be trials as most people often have, it’s not something to fear or be upset by. I also wish I had more involved myself in the disability community in my area and was told more about the opportunities to get involved. I think it’s important to understand and share experiences with others who face similar conflicts with having a disability.


5. How does low muscle impact you today as an adult? What do you consider your greatest accomplishments?

As an adult, I have noticed I am more tired and fatigued than most my age. I require accommodations set in place at school and work. I am been fortunate enough to have understanding professors and employers. I do wear custom-built orthotics in shoes that will allow it. But I am also going to give credit to hypotonia for the reason I am so goal-oriented and detail-focused. I use the lessons hypotonia has taught me and apply them to all aspects of my life, whether that’s personal, career or hobbies. Living with hypotonia is one of the reasons I got into minoring in disability studies. One of my greatest accomplishments is completing a four-year degree from an accredited university. I am a first-generation graduate and am excited to apply my studies to my future goals, which include going back to school one day and receiving my master’s degree. Currently, I am working with my art history professor to plan and teach a lesson to my fellow peers on disability in art history as my final project for my capstone class.


6. What lessons has hypotonia taught you?

With hypotonia comes a perception of laziness. And because I am considered high functioning, a lot of the times, I feel the constant need to justify having my disability. One of the lessons having an “invisible” disability has taught me is not to apologize for having the body I was given. I used to be embarrassed and get frustrated to ask for help or accommodations to fit my needs. But the reality of it was learning not to apologize for basic human comfort. Adaptation is another lesson hypotonia has taught me. I am better able to communicate what it is I need and understand when my body has had enough. Time management and goal setting is a huge impact hypotonia has on me. Hypotonia has allowed me to not only develop skills and traits but to find my identity.


7. How have your experiences impacted your art?

My art is my hypotonia and my journey with chronic pain. I’ve always been told my right side is weaker than my other and I am asymmetrical. And those are valid observations that took me a while to come to terms with. But now, I use those ideas and project them in my artwork in order to accept and understand myself and my diagnosis better. My artwork over these past years has been dedicated to self-healing and coping. Without my experience with disability, I don’t think I would be an artist. My whole art career is built around my experience and how it’s influenced me.


8. What would you say to parents of children who have low muscle tone?

Understanding that just because your child might have limitations doesn’t mean the sky isn’t limitless. I was grateful enough to have supportive parents who provided an encouraging and loving environment. Keeping an open discussion and maintaining communication between a parent and a child is one of the best things you could do. My diagnosis was never used as an excuse to stop me from doing the things I wanted to do. I think advocating for and understanding your child’s needs are essential. I am a huge advocate for early intervention and organizations such as Joya (formally known as the Spokane Guild School) that provide those services. I attended the Spokane Guild School back in 2000 and can say their live-changing program of physical, occupational, and speech therapies and other services I received as a child helped me immensely not only back then, but also moving forward throughout life.


How can I describe hypotonia in a way friends and family will understand?